Forum Replies Created
Thanks Terri. I don’t wrestle or do any contact sports. I had sex with a CSW that started all of these crazy symptoms so think it’s infectious in nature. Sex was with a condom (vaginal) but not for oral. Before my lesions appear, I do have some prodrome like symptoms like tingling, throbbing, itching, achiness and heavy fatigue.
I haven’t been able to schedule appointments with a dermatologist at the same time I’ve had a lesion. Something I will continue to try to do. That’s why I’ve been taking photos to ensure I have some sort of documentation as these symptoms progress, heal etc..
I do have one lesion in my groin. It’s gotten more red and irritated over the last couple of days. Wanted to see if you had an opinion on what this lesion could be. See attached. Again, so much activity all over my body. The small cuts are strange, I’ve never heard of anything that can cause recurring spontaneous cuts besides herpes, but this is all new to me.
I don’t know why it’s traveling. The arms, shoulders, head are all new to the last few months. The first months were groin, anus and oral only. Now I feel like it’s all over. I’m not rubbing one area and then touching another so don’t know whats going on.
Thank you very much for the reply and great service.
So it sounds like it’s possible to spread herpes via sharing utensils or cup but very unlikely given what you have seen and heard. Does Herpes live in saliva or is it just on the skin?
As for your comment about catching HSV 2 in the mouth region, HSV-2 typically sheds more frequently than HSV-1, correct? Would more outbreaks occur in the mouth if you happen to catch HSV-2 there? Also, I’m wondering about what you are saying that it stays there. If people catch either HSV genitally, it can move up to the mouth region, right? Strange that it does not do the reverse.
Thanks again and happy Sunday.
By meaningless, you mean it doesn’t have any correlation to my symptoms?
Haven’t been swabbed tested because i haven’t been able to get an appointment in time during inflammation. Your clinic is under my insurance according to your site so hopefully I’m good there. What’s the normal turn around time for results?
Just added some questions.
I have an update. I came to my doctor last week, advocating for the Western Blot. He was very hesitant. We agreed to do another round of blood tests with their place and LABCORP. This was week 14. I got the tests back on the HSV-1&2. Still negative. However, I learned I had very high rates of EBV Virus (also in the herpes family as you know). Also in my WBC,I had high Neutrophils (7.4) & Calcium, Serum (10.3).
So now I know this, I can’t find information that links EBV to my symptoms:
– Red sores on genitals that are painful to touch
– Body itching
– Sharp Nerve Pain
– Itchy eyes
Also, I asked for the specific IGG Herpes values and they say they can’t give them to me. That they just under 0.91. Regarding the Western Blot, he has been holding the line about his company’s displeasure with Herpes Blood Test. Said they prefer to test the lesion with a direct fluorescent antibody test. They also mention that it’s been tricky handling this third party test with their billing department which he says makes him uncomfortable as my tests have been negative and his company may not allow it as they strongly oppose herpes blood tests. He also was telling me it was going to be very expensive because of shipping my blood overnight in a cold, secure container.
The first two doctors who visually diagnosed it as Herpes have made it hard for me to let it go, especially when I have had those recurring red sores in my boxer short region.
I’m not sure if you deal a lot with EBV, but do my symptoms feel like EBV to you?
What percentage accuracy in your mind is an IGG Herpes Blood test at 14 weeks, 90% or more? What percentage would the Western Blot be in comparison?
Thanks again for your great service and care.
Thanks Terri. Just an update.
I couldn’t get an appointment and now my red sore is gone. It was red, sore and painful to touch near an old scar I had in the region. It flared up and receded in a day. Never manifested into a blister like the rest. Back to the blood draw drawing board.
Wow, I’m surprised you actually called them. Way to give them hell! You should call my medical group while you are at it and persuade them to let me take the Western Blot 🙂 The more I learn about Herpes, the more complicated I feel an affliction this is. Just seems like it’s not always straight forward to diagnosis and doctors don’t regularly test it when they test for STDs.
I stopped taking the Monolaurin and L-Lysine. Been feeling run down again. I hope I get some sort of treatment soon, antivirals or something else. My body is taking a toll and tired of waiting to get a diagnosis of “something.”
Thanks again for the great care. I’ll let you know how the Western Blot talk goes.
I woke this morning with a painful red sore. It’s only happen twice so far. The sore is barely noticeable, looks like a small light red patch, but it’s painful to touch.
My question is about swabbing. Does it have to be a full on open blister to swap it? When should one swab test?
Thanks Terri. I am taking your advice regarding doing the test at 16 weeks. I thought I had Herpes, especially because of the red sores that my doctors said was herpes but I really in the end of the day, don’t truly know and just confused. I think they just gave me bad advice.
I am just a person who is not feeling well, trying to figure out what is going on with my health. To your point, I do want to rule out Herpes but the main thing I need to figure out is what I do have so I can treat it. So if it isn’t Herpes, trying to narrow down the possibilities of other ailments to get treatment, and ultimately, to get better.
I appreciate your offer about ordering the kit. I made an appointment with my provider for next week and will try to insist on getting the Western Blot which will contact you guys or UW.
Just so you know, I am very open. I will believe a 16 week test if you tell me that it is conclusive. Given what you said about PCR not being standard as a blood test, I will take your insight on that.
Just in case you are wondering, here is more info on it:
Just paid for follow up questions.
My medical team is trying to dissuade me from taking Herpes test again. I continue to struggle with these daily symptoms. Here is their response:
“As an organization, we tend to steer away from blood testing for Herpes as it often causes more confusion and there are false positives. Additionally, a true positive on a blood test may be from a previous infection or history, and that would
be confusing for the patient that has a rash currently – does that make sense?”
What do you think of this? How can you not test for it, do you just let people go on and wait for a blister? I definitely want to take the Western Blot. Quest Labs offers this, no?
When thinking about my case, I wanted to say when I describe the symptoms, they hit me in waves. I’ll start to feel run down all of a sudden, followed by tingling in my feet and genital area, followed by a dry cough, itchy eyes, warm temperature, itching, and light sneezing. Like I was mentioning, I use Ibuprofen to provide short term relief of the symptoms. I also started to try Monolaurin which also seems to be providing relief.
What else could this be if it is not Herpes? The ongoing symptoms are negatively effecting my daily life. I’m trying to find treatment, it’s been 14 weeks since exposure, approaching 8 weeks since outbreak.
Thank you for your care and advice.
Thank you for the follow up. To answer your questions:
– No one swapped the sores. The only one a doctor was the initial one on the Penis and neither swapped it. Saw commented that it looks like Herpes. A biopsy was done on my Molluscum but that was it.
– Yes, my parter had cold sores. She hasn’t given oral to me so no. My other encounter I had uncovered oral so almost positive it came from that experience.
– I had a cold sore on my lip. It rose up on the top of my lip and looked like a cold sore. It didn’t stay around very long, just a few days. As regards to the sore on my nose, it has been wanting to come out over the last few weeks. It gets very red, very painful and small white blisters start to form but never fully blister wide open.
– Yes, I had sex with my regular partner after the encounter and I am worried about possible infection. What exactly is the mystery. It’s clear we are both sick with something. I have reason to believe the person I had the encounter with had it. And it seems like red sores and some of the other symptoms fall in that suspicion.
– As for Ibuprofen and L-lysine, I read online about how it eases symptoms of herpes. So far it’s been the only thing that can give me a few hours break from the symptoms.
Sorry for the long rants, I had a lot of information and just wanted to make sure you had the full picture when creating your analysis and recommendation.
One of the main things I’ve picked up is that it looks like they botched up my week 11 test. So it’s very reasonable to believe that 9 weeks, just coming off of acycolvair could have skewed my week 9 results. I guess the only thing I have to gain at this point is a) definitive information on my status and b) antivirals to hopefully help with these symptoms.
I will test again. I will ask for the western blot, I didn’t know about it and I suspect neither do my health care providers. I’ll make sure I request more questions for any follow up questions as needed. Thank you again for your advice.
Wow Terri, great response. Thank you for your analysis. Very helpful.
I have not had a classic blister lesion yet (so no swap test). I have had multiple red sores. One on my penis and one in groin right above my genitals. Both have occurred during this 7 week span. The penis one came right on outbreak day. When I showed them to two different doctors they both thought it looked like Herpes. One gave me a 10 day supply of Acyclovair around week 6. No more since then to answer your question so only a ten day supply at week 6. My penis red sore went away within 2-3 days of acyclovair and never became a blister.
The other red sore came one day after I was experiencing intense tingling, run down feeling. It appeared above my genitals and it was very painful to touch. It never manifested into a blister and went away in 1 day.
If this isn’t Herpes, I wonder what these red sores are? I really want to believe the analysis that it is something upper respiratory but what about these red sores that come after these prodrome-esque symptoms? Having ongoing itchiness, tingling around my body and itchiness especially in my eyes is very strange.
I don’t understand why they did a PCR blood test. The health care provider said they would check for HSV-1 & 2, took blood and a couple days later I get the results and it says PCR negative for HSV-1 and 2.
To answer your question, I have never had a cold sore in my life. I have a history of canker sores, I used to have those all the time but never a cold sore. And I’ve had one lip cold sore and nose cold sore that’s trying to come out in a span of 7 weeks. Does GHSV-2 ever cause face cold sores?
Something to consider when thinking about my case, everything hit me like a tidal wave. One day I was feeling 100%. The next day I started to get extremely tired and develop flu like symptoms. I looked at my groin region and found:
I think this has been complicating my case. I think whatever is inside of me right now, triggered these up. The doctors zero in on this and not what is going inside my body. Is it just Molluscum? It is multiple things going on, I don’t know. I had about 6-7 bumps form around the vein line. I have confirmed via biopsy that this is Molluscum. But Molluscum doesn’t explain these other symptoms like the itching, tingling, cough, sweatiness, fatigue that has been happening.
If it isn’t Herpes, the question remains, what is going on with my health? My symptoms are almost daily. I’ll feel semi-normal then I have an episode where I start to feel tingling, start to develop cough, get really sweaty, itchiness, nose gets painful (and looks like it starts to blister). What is that? I have been managing these pretty well by taking ibuprofen and L-lysine but the fact that it’s daily has been tough.
Also, I’m noticing similar symptoms with my parter during the same time frame which is more information in this overall picture. She developed cold sore, flu, itchiness in eyes and several of the same symptoms.
With this information, what do you think? Thanks again for your excellent expertise!
Sorry for that. Let me clarify, at week 11 I did a full blood work test looking for lots of different things. On my test from week 11 it says
HSV 1/2 PCR
– HSV-1 DNA Negative
– HSV-2 DNA Negative
It was done by LabCorp Laboratories.
I also forgot to add that I did a week 9 test
HSV Type 1-Specific Ab, IgG
HSV Type 2-Specific Ab, IgG
They came out negative (<0.91) for both types.
Week 6 test
They only looked for HSV-2
HSV Type 2-Specific Ab, IgG: negative (<0.91)